I never tell anyone what to do about Crohn's, I only tell what I do. The only difference I can tell between the two of us is that you wait until something goes wrong before you contact a doctor or go in at different times for an examination at which times you are told you need to have this or that done or see me in six months. That's just not good enough for me.
After all of the research I've done in the 54 years of Crohn's, I consider myself an expert in how to handle it (as far as my own body goes). I am a true believer in preventive (self) medication for myself since 1989 (19 years now) without any serious or even remotely serious problems with Crohn's. I actually consider myself to be in complete remission for all of those years. But, before that I spent 35 years of my time battling Crohn's, working, etc. During that time, while always heeding my doctors advice, I also had 9 surgeries including 6 major resections which eliminated 40 percent of my intestines. Now, if you have done research on Crohn's, you know that your body can still absorb enough to sustain growth, etc. with 60 percent of your intestines but if you lose 70 percent or more, your in trouble, so I couldn't afford to lose anymore intestines.
Now, we know that nobody knows for sure what exactly causes Crohn's and we know for sure that there is no cure for it, the only thing we do know for sure is that Crohn's is an inflammatory disease and can spread deep through every layer of tissue in the affected areas
Inflammation was the key word for me. My research told me that my Adrenal Glands produced between 8 and 9 mgs of Cortisol which should be enough to prevent inflammation in the normal body. a person with Crohn's doesn't have a normal body as far as I am concerned or they wouldn't keep getting inflammation so I decided to help the Adrenal Glands with a little prednisone every day or every other day sometimes just so they wouldn't close down. It Worked!!! no more inflammation for me except once maybe every two or three years when Crohn's tries to bust thru and that's when I go on the two or three days of extra predisone that I was talking about.
So, Yes, I think you and LBJ or right to contact your doctor about everything you do concerning Crohn's, but in the back of my mind I wonder if any of your doctors has told you to be in the office some morning between 8:30 am and 9:30 am to have a blood draw to check and see if your Adrenal Glands are working properly(the test is only good if it's done early in the morning). I consi-der the Adrenal Glands a very important part of treating Cronh's disease, and I'll make a wager that less than 10 percent of the people on this forum have ever had them checked unless they asked for them. They play such an important part in our bodies and affect almost every organ and tissue in the body.
By the way, I never missed a day of work unless I was in the hospital for surgery, I even set a time limit on surgery, i would be out for no more than ten days, four days in the hospital and no more than six days recovery time, I made the rule and I lived by it,that's how I became mgr. of a large firm in Atlanta, traveled the world (boy, that would be hard, calling my doctor from Greece for advice or somewhere else). and as far as serious consequences for long term steriod use go, I'll be 81 years young in Feb., and if they are going to show up they better start pretty soon. If I had known I was going to live this long, I would have taken better care of myself.
My mottos "People who don't dare, never get anywhere" and from Ted Turner, "Either lead, follow or get out of my way"